Hysterectomy.

[Beanfield]

Hurrah and Hallelujah. My uterus has been given an eviction notice!

30 years of being a complete bitch. Let me down twice (miscarriage and ectopic). Did what it should do twice (2 grown up DDs). Never officially diagnosed with anything but suggestions have been PCOS and endometriosis. 30 solid years of hideous periods. 30 years of being fobbed off by assorted GPs who told me it was normal to faint, vomit, incapacitate and take over my life for one out of every three or four weeks.
It’s got to the point where my cycles are just 18-20 days long, I bleed huge amounts for 5 days (emptying cup every 2 hours), overflowing, clots. Light bleeding on and off for a further 4 days. Bleeding on and off randomly mid-cycle. Puking and dizzy. Period diarrhoea, excruciating, labour style pain. Another 3 days of pain while i ovulate plus bleeding then too.
Tried everything. Mirena - I bled for 8 months then it fell out. Painfully. Pill - unhinged. Drugs - I’m allergic to the good ones and the others don’t work so well. Herbs, flowers, tea, homeopathy, diet - all bollox.

Finally saw a Dr who actually listened and agreed to whip the bugger out. Not sure how yet as apparently it's ‘bulky’ (like the rest of me) so need a scan to see how big it is. Also waiting on smear results and endometrial biopsy (which hurt like a bastard and is still hurting 4 days later).

@catnidge - that's good news! I had to google vault smear - I guess you must have had cervical abnormalities? No, I'm not taking any iron supplements, but the consultant did say there was no bleeding during the op, and I certainly haven't had any blood loss since. I think I'm just weary because my body is busy repairing itself.

That's really great news Catnidge.

I'm a kind of a foster carer for people with learning disabilities. I have two adults living with us with downs syndrome. There's no heavy lifting involved or anything physical apart from I need to give my lady a bath and wash her hair. I don't need to lift her into the bath but would need to lean over the bath to wash her hair.

I've extended my leave until Monday and it was left that I will play it by ear for then. Because I'm self employed I don't get sick pay but I get a certain amount of paid respite days which are essentially used as holidays. The issue is I am so tired, weak and still very sore. One of my service users is prone to challenging behaviour and frankly I'm just not mentally ready to be dealing with all of that as well.

I've really struggled today. I've had more pains today than day one. I actually went to bed hours ago but I've got up again as I couldn't sleep due to the dull achy, and sometimes sharp pains in my tummy. I'm hoping it's just my body repairing itself. If it continues I think I might ring the hospital.

cointreau, yes I had widespread high grade Cgin and had most of my cervix removed in August. Now it's all gone but they still need to check for changes at the top of the vagina. I just wasn't expecting the first vault smear so soon.

crazy it's so difficult when you are self enjoyed. The pain may be wind. I would try to rest as much as possible to give your body a chance to heal. Contacting GP if pains continue is a good idea.

I understand how you feel mentally about work. My job requires me to be very positive and upbeat all the time and I'm not quite there yet

By all gone, I mean my cerxiv is all gone!

Be careful doing too much too soon, @Crazyladee. If you set yourself back you might end up needing more time off.

My cervix is gone too, but as far as I know it was normal, and it was just an endometrial tumour.

I'm KNACKERED today - just the simplest task and I have to sit down to recover. Pain continues to diminish, so I'm really really trying to resist the urge to stretch/lift, as I just know it will be a bad idea.

I have however started my Kegels (was told to wait a few days, so as not to stress out my bladder), and have downloaded an App to remind me three times a day and guide me through my sessions. I never really bothered with them before, but I'm paranoid about things prolapsing now there's less holding it all up! I've also been given some abdominal exercises, but they are mostly to do with engaging your core, which I do as a matter of course anyway, having done Pilates for ages.

Re: going back to work - I have an office job, but it's never just sitting in a chair - I'm up and down to the printer, going to meetings, carting files about etc. And I look after the office IT, so am forever crawling under desks sorting cables or replacing PCs. I'm not sure I'd even get up the stairs right now!! I anticipate going back on 2nd December, either working from home or doing half days. We'll see.....

cointreau I think its standard to remove cervix as its a place eondo could recurr anyway.

I too am paranoid abouf a prolapse and have been doing my kegels although not as often as I should. I've had better bladder control since the op though. Two grapefruit size cysts and an 18 week pregnancy sized womb were removed and my bladder is not so squashed. I can sneeze without worry now

Going back to work is difficult because there definitely seems to be good and bad days for everyone. As the internal healing can take up to a year, it's not surprising.

Hello Everyone, please may I join I’ve just sat and read through this whole thread!

Bare with me as this may be a load of waffle.

I’ve been having chronic pelvic pain for over a year. I’ve always had irregular periods and on/off pain especially around ovulation and before my period. I have four children (9,7,5,3) so I put the irregular periods and worsening pain down to this. A year ago the pain became more frequent and more intense and I started tracking my pain and cycles, we aren’t having anymore children (DH had the snip feb 2018) I realised my cycles were still irregular and because of the chronic pain, it affects everyday life now I really struggle,I went to the gp and was sent for a scan in Feb. I was told I had cysts on my ovaries and due to my pain I needed to see gynae. A failed referral, incompetent doctors surgery and nearly 9 months later I was seen today by the consultant I also saw for my pregnancies! A lovely man and very good at his job.

He told me my ovaries are heavy because of the cysts and hanging down causing me pain and that my scan showed I have a bulky enlarged uterus and along with my pain this means I have adenmyosis. He explained that because I’m young (nearly 28) he doesn’t want to rush into a hysterectomy. He gave me an injection called zoladex and said I need another in 28 days and again 28 days after that then he’ll see where things are at but ultimately I will need a hysterectomy as that’s the only fix for adenmyosis and injections cannot be taken long term.

I had my youngest with me and I was shocked to have someone actually take me seriously and give me an answer and do something for me (after various doctors and a&e trips telling me it’s in my head or just a bad period!)

Am I right in thinking if this injection helps my pain then I’ll be going for a hysterectomy ?
Also does anyone have any experience of the injections ? I just want the pain to stop😫

Thankyou lovely ladies xx

Hi @UnbalancedMum - I can't help you with your specific questions, unfortunately, because my uterus has always been very well-behaved - right up until the moment it grew a tumour - but I'm sure there will be someone on this thread with experience of Zoladex.

But it is nice to hear you have sought help and are being taken seriously, as many people struggle on for years in pain and discomfort. You are right not to rush into a hysterectomy, but only you can balance the pain against the chance to have more children.

Anyway, Day 9 here, and feeling great! No pain at all, wounds healed (apart from slightly oozy bellybutton) and feeling stronger every day. Last night I changed out of my joggers, put on a (comfy) dress and some make-up and went out for dinner with friends - it was so nice to get out. I am going to be careful not to overdo things over the next week, but will try driving in a few days.

Just had a bill for my take-home drugs, though - £97!! Will have to phone BUPA on Monday to find out if they will pay or not.

Hi unbalancedmum, I don't have any experience of zoladex either.
Is there the option to have the cysts removed? I had 2 grapefruit sized cysts removed, however surgery may not be an option of you have multiple small ones.

A hysterectomy is a major operation. Even if your ovaries are left in place there is a chance they will fail early putting you into menopuase. You need to discuss this with your consultant and see what your options would be if this happens to you.
Your pain sounds terrible though, so it will come down to balancing out the risks and benefits for you.
Good luck!

cointreau pleased to hear you are feeling good. I hope that was more than a packet of paracetamol for £97!

Ladies

I’m booked in for December for a vaginal hysterectomy. I’m hoping you can give me some advice on what I can expect on timings recovery wise and is there anything I should be doing?

I will have all 5 of our Children staying with me over Christmas (we are a blended family) and am
Dreading it. DH will do most of the work but I know I will still have to sort our arguments and deal with my dd who has ASD.

Help!

Hi @Ballstothisdotcom. Recovery times seem to vary, but they say 2-6 weeks before you are approaching normality, and many people take longer. I think I've bounced back fairly quickly (now Day 10) but I'm very healthy/fit, not overweight, had no complications, and I've always healed fast. Having said that, the exhaustion is extraordinary - I accompanied DH and DS to Currys PC World today for some Black Friday purchases, and could barely stand up after a very short while. Like walking through porridge!

In terms of "doing stuff" you will definitely have to avoid anything physical over Christmas and insist that your family helps. Direct from the sofa!

My consultant told me to look at the RCOG website, which has some excellent videos and leaflets regarding recovery from hysterectomy. Here's the section on vaginal hysterectomy.

@catnidge - the bulk of the £97 was for those infernal blood thinner syringes. 10 down, 18 to go.......

@yoshimi - are you still on for Tuesday? Hope you are feeling OK. Focus on eating well, getting some sleep, and hydrating like mad tomorrow.

@Mummaofmytribe, @Crazyladee - how are you both?

Hi cointreau yes still on for Tuesday- had logged out of all my cookies in an attempt to get my screen time down last week (which worked!) so need to catch up with the thread! Life has been very stressful here with work, family, etc so am not as prepared as I’d like to be. Have now been signed off work until Feb so I need to let it go and trust my colleagues who are covering me... I’m really looking forward to having a bit of space.
Good to hear you’re recovering well- the nurses told me that exhaustion would hit for quite a while afterwards. Ballstothisdotcom I hope your family do step up to help, but it can be so tiring with the mental load even if people are helping with the day to day jobs.
Catnidge I already have a prolapse which I’ve kept at bay for 10 years with physio and pelvic floor exercises. It’s recently come back to haunt me after I stepped up the running and stupidly did some weights in an attempt to get as fit as possible. So am now back to yoga and swimming which I am really going to miss. I am terrified about the prolapse coming back properly after the nurse warned me it is likely.

Crazylaydee I hope back to work goes ok for you tomorrow!

Hi cointreau I'm hanging in there. Not really in any significant pain at all (day 28) but so emotional and fatigued. Trying a massage with emmett therapy today to see if that helps. I'm constantly either irritable or feeling like I want to week (but can't)
I think I'll give it another week then get my HRT assessed.
How are YOU doing?
And everyone else?

*weep!

Shit I am overweight at least by a couple of stone. The doctor hasn’t said anything about that to me. I’m going in for my pre op this week I hope they don’t move the operation

Regarding work, I'm torn between worrying that they can't manage without me, and worrying that they'll start wondering what on earth I do all day because they're managing perfectly well in my absence. I do have a very efficient assistant, but she's only part time, and it can get really busy in the lead-up to Christmas.

But I have to put it out of my mind for a while. I'm just not used to being out of action.

@Ballstothisdotcom - have they previously mentioned your weight being an issue? If they haven't, please don't worry. For any operation being very overweight can carry an increased risk, but I doubt a couple of stone overweight would be a problem. But that's why there's a pre-op check. Fingers crossed for you.

No nothing has been said at all. Doctor hasn’t even mentioned it.

@yoshimi good luck for tomorrow! I found I was nervous as hell in the lead up to the op but on the actual day I felt fine. Be sure to come back and update us when you can. I've extended my leave so my service users are now coming back next Monday instead of today.

@cointreauversial I'm still taking Dihydrocodeine plus ibrupofen and paracetamol. What are you taking for it to cost so much??

I'm okay but just wasn't prepared for the sheer exhaustion. I'm literally sleeping for 16 hours a day! It's been ten days since I came out of hospital and I've barely left the house. I haven't really wanted to. DH suggested lunch on Friday. Normally I would have jumped at the chance but I just couldn't face it. We went to the in laws last night for sunday tea and I had to go upstairs and lie down for a an hour or so.

DH has been a godsend. He's off work himself as he had heart surgery in July. He's coming to the end of his recovery now so there's not much he can't do. He's cooking every night and I have a cleaner coming tomorrow. I stupidly mopped the kitchen floor the other day without thinking. We have one of those spray mop things and it's quite lightweight. My god did I pay for it afterwards!

Cointreau - I'm surprised you are considering driving so soon. (or did I read it wrong?) My consultant told me no driving for 4 weeks. And after 4 weeks to check with my insurance company that they are okay with it. Apparently some say 6 weeks.

@unbalancedmum

Ive had no experience of the injections you are having. It does sound like your consultant is trying to put a sticking plaster over the fact a hysterectomy is inevitable but he's trying to delay as much as possible.

27 is a very young age to have a hysterectomy. I'm 20 years older than you and apparently considered quite young for it. The other day, I had a little cry at the complete finality of my operation. (I did snap out of it quickly though) My DH had the snip 17 years ago after DS2 was born but for a woman it feels so final. And, at the moment, empty. I'm sure I am just a bit emotional as im only nearly two weeks post op.

Having said that, it's your body and if leaving things as they are is ruining you life, and you have exhausted every other option then go for it. There was a relatively young girl on my ward who had the same operation as me. (total laparoscopic) She said 4 hospitals turned her down due to her age. She looked late 20's early thirties. She had her mobility scooter with her and she said she had enough medical problems to deal with. I can totally see why she persisted and eventually found a hospital who would do it.

@ballsothisdotcom

How overweight are you? You say at least a couple of stone but I'm sure there won't be a problem unless you are well into the obese category. They would be surely able to see just by looking at you if you are obviously very overweight to the extent it would be a problem for your surgery, and at that point it would have been discussed with you. Surely they have checked your BMI well before now? I'm neither overweight or underweight and they checked my BMI back in April when I went on the waiting list and then at the pre op a couple of weeks ago. I'm assuming for the anaesthetic.

@Crazyladee - it's the blood thinning syringes (28 of the damned things) that cost the money. I need to call BUPA to see if they cover it. Re: painkillers, I haven't needed anything. if you are still taking codeine that will make you feel spaced out - are you able to switch down to paracetamol? And driving-wise I was told I could drive as soon as I feel up to it. And I feel fine.....

.....or should I say I felt fine until midnight last night, when I suddenly felt blood flowing. A LOT of blood, bright red, and non-stop. After a while I got scared and woke DH up, and he called an ambulance. Spent a sleepless night in resus, but they slowed the bleeding right down with clotting injections, and now I'm on a a ward. I was terrified that the stitches at the top of the vagina had come apart, but it appears not. Current thoughts are an infection (but I feel fine!) or a haematoma. But it was proper red blood, not something that's been collecting for ten days. Dunno. Anyway, am due to have an ultrasound and maybe some other checks, so we'll see.

It was quite awful being rushed off, not least because the kids were quite upset. And had to clear up the lake of blood on the bathroom floor. But the ambulance and A&E staff were quite wonderful.

Anyway, that'll teach me for being such a smuggo about my fast recovery. Take note, ladies, take it easy!

Oh my god @Contreiu that must have been bloody scary !